Friday, May 25, 2012
Yesterday afternoon I was busy trying to determine what was missing out of the suitcase that has been sitting open for weeks on the bed in the extra bedroom of our apartment at Target House. I had packed it originally for Eli to be admitted in-patient at St. Jude to begin his chemotherapy, but he has not been well enough to be in the hospital. So, piece by piece I had been robbing it of socks, shirts, underwear, and legos as our delay drew out longer and longer. And, to be accurate, we had one false start last week where we packed up to come, and were sent home. But, I am a minimalist when it comes to necessities, so if it was packed it wasn’t extra. When the admission fell through, I put the suitcase back on the bed and again would retrieve what I needed as we needed it. But, yesterday –even though he is still not well enough and his ANC is only 600– we zipped up the suitcase and settled into our hospital suite last night. He began his high-dose of healing poison regimen this morning. He received two chemo drugs and one protection drug to help his kidneys, bladder and other organs survive the chemo, but they count it as chemo. All together it took six hours for the drugs to enter his system, but the sickness from it continues. So, he was given four different kinds of nausea medicines in an attempt to control that. Some other preventative measures were taken, like blowing in little plastic device to keep his lungs from getting infected, swishing stuff in his mouth to keep his mouth from getting infected, and taking a bath in betadine to keep his body from getting infected. It’s interesting they have to basically push the body of a 7-year-old to near death in order to try to save it. But, he has done well enough today, and as expected. He has vomited several times and struggles with diarrhea, has had a lot of stomach pain, and been very drowsy. Tomorrow, the drip will not last as long. It was an emotionally interesting day yesterday as I prepared for us to come. Eli was feeling well and in a good mood. He was excited to come because he had been told how great it is, with all the video games and movies (which has not completely panned out, by the way). Plus, it was something new and had a lot of attention tied to it. So, he had a lot of playful and excited energy. I, on the other hand, had to put a big old scratchy rope around my brain and tie it to a stump to keep it from going places it just doesn’t need to go. I wanted to share his enthusiasm, for his sake and mine, but it was difficult. A day I have prayed to hasten was finally here, but I was fear-struck standing at the mouth of the valley. I recently read one of the last posts -if not the very last post, I’m not sure- of a mother whose young son was dying of a brain tumor or tumors at the time she wrote it. His death was imminent, days if not hours away, and he has since passed. As a general rule, I have tried to avoid regularly reading any books or blogs about childhood cancers except something that might be scientific or news, because when I’m drowning the last thing I want is to be doused with water. But, that is a general rule, so sometimes I fall victim to the lure of facebook posts about other children and families fighting similar fights as ours. I want to offer my own prayer on their behalf, but I tread hesitantly to gather current information. So, I followed this post because of the urgent plea, and was drawn into the prose of her blog. It was beautiful, and not in the rainbows and sunshine way, and not even in the peace and comfort way. She was angry. I mean she could have swallowed a heap of coal and spit fireballs. She was not happy about the road on which her family was traveling. And, she stood on the mountain top and yelled it with ground-shaking echoes in agreement. I applaud her honesty and ability to express it simply and without apologies. She was clear that she trusted God and His will, but that didn’t mean she had to fold her hands and smile. I completely understand and agree. I’m sure that the venting was part of her healing, but still it was a beautiful expression of raw emotion. God’s answer to one’s prayers can be tough medicine when it’s not the answer you want. I said early on after Eli was diagnosed that I believe we are in a situation where we need to change God’s mind, much like Moses did in Exodus 32. That was not a general statement based on the general fact that only about 60 percent of kids with Eli’s level of medulloblastoma survive. I believe that God has already answered my prayers, and sent a gift of comfort because He knows I’m not going to like the answer. I believe Caleb is our extra. After Vic and I had our first child, we decided that we wanted three to complete our family. So, we prayed and asked God for three. We built our house for three; we bought a car for three. After Eli was born, the decision had already been made, so there was no question that we were done. I sold everything related to baby, and even hurried Eli out of his crib so that I could get it out. My pregnancies were easy, the babies were easy, but I was ready to move on to the next phase. I had emotionally come to terms with no longer giving birth, so we made efforts to avoid conception (albeit feeble efforts), and we continued down our path as planned. Then one careless night, the road signs were switched and we took a wrong turn. I was pregnant with number four and was devastated. I did not want to go through it all again, I did not want to go backward, and I did not want to deviate from the plan. I was depressed and angry the entire pregnancy and some into the first year. The baby I would adore and obsess over, of course, but the rest of it, the whole of it, I did not want to go through at almost 40 years old. But, I told myself that after doing almost all we could to prevent his birth, God made sure Caleb was born. So, He must have a plan for him. Of course, I can’t know that Caleb is God’s gift of comfort for what is coming, but with each setback Eli has I think about Caleb and his birth. And, honestly, it is on my mind often when I’m with him wondering am I wiping the nose of God’s direct answer, or am I preparing a peanutbutter and jelly sandwich for God’s direct answer. During my mature moments, I’m humbled to think that God loved us enough to care about our earthly comfort and to make sure that we had the three children for which we had prayed. Other times, I get so angry, yelling in my prayers that I selfishly want both of them, that the loss of Eli would leave a hole too great for even precious Caleb to fill. Such childish arrogance I have talking to God, but the Bible teaches us to approach Him with confidence in our prayers and let it be known what we want. From where I sit right now, watching a child’s body fight to survive the effort of purposefully being poisoned, I want God to change His mind. I want both of them.